Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.

Sunday, March 22, 2009

Another cancer survivor whose blog I’ve been following has succumbed to his disease. Dan Waeger, a young man with lung cancer, died last Monday, March 16. I’m a little behind on my blog reading, so I only just realized it.

(Prayers and good wishes go out to you, Meg. From your blog, it certainly does appear that you and Dan had a very special relationship indeed. No doubt you’ll miss him terribly.)

The blog Dan and his fiancee Meg have been writing is called, “Waeger Will Win.” Less than a week before Dan’s death, Meg wrote a little reflection on the meaning of winning, when it comes to cancer.

She was recalling something she’d heard Lance Armstrong say at a conference. Lance was relating a brief conversation he’d had with the chairperson of his foundation board. “This is fun,” said the executive to Lance, caught up in the enthusiasm of whatever project they were working on.

“It’s only fun if we win,” replied Lance.

Lance Armstrong is, of course, one of the most competitive people on the planet. It’s no wonder he’d view the work of curing cancer as the biggest, baddest bike race of all.

Meg offers a different perspective. She has some wise words to share about winning:

“But when Lance said that to the Livestrong audience, I remember thinking that judging victory in cancer solely by ‘winning’ is maybe worth another look. After all, many cancer survivors, like Dan, don't see the ultimate victory in being cured. There are 100s of cancers, and to ask for a cure sets a high bar, and one that may be unrealistic in our lifetime. This is not a ‘one-size-fits-all’ solution. Many cancer survivors would be ecstatic if their cancer could be managed as a chronic disease - like diabetes or AIDS. Or if genetic testing could even narrow down the treatment options so that they avoid toxic and crippling treatments as a cruel form of trial & error.

The day I heard Lance speak was about 3 weeks after we’d found out that Dan’s cancer had spread. I knew that even then, if Dan’s ‘win’ could only be fun if he was cured, than we were in trouble. If he passed on from cancer, we would surely say that he ‘lost his battle.’ But as many of you’ve pointed out, Dan’s story isn't a straight win/lose scenario. There are more ways to win than just judging the score.”

Indeed. In this life, there are winners and there are winners. Some win by conventional means, edging out a host of competitors by crossing the finish line first. Others start winning from the first moment they leave the starting line, regardless of the outcome.

We can be winners in the here and now, not just in the distant future. From everything I’ve read of Dan Waeger, he seems to have been one of those people who began winning from the first day of his diagnosis.

Faith helps create winners like Dan, of course. The Apostle Paul has something to say on that topic:

“But we have this treasure in clay jars, so that it may be made clear that this extraordinary power belongs to God and does not come from us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be made visible in our bodies. For while we live, we are always being given up to death for Jesus’ sake, so that the life of Jesus may be made visible in our mortal flesh. So death is at work in us, but life in you.” – 2 Corinthians 4:7-12

Clay jars. Amphorae, they called them – ordinary, everyday vessels used in the ancient world to carry water, wine and all manner of other liquids. To Paul’s readers, clay jars were about as exciting as Tupperware – and just as commonplace.

Yet, this is the image he chooses to describe the treasure of the Gospel – the very treasure that enables God’s people to be “afflicted... but not crushed... perplexed, but not driven to depair,” and so on.

In the world of cancer, the winners are not only those competitors who go charging across the finish line, pedaling furiously. Somewhere back on the racecourse a rider sits under a tree, dozing in the summer sun. He will not open his eyes again. He will not cross the finish line. He doesn’t need to. The finish line has come to him.(To Meg and all of Dan’s circle of family and friends: blessings be upon you in these days of goodbyes. Remember what goodbye means: “God be with you.”)

Saturday, March 21, 2009

Swiss researchers have found a way to use a human antibody called L19 to recognize and target newly-formed blood vessels that occur in tumor tissue.

The team of researchers, led by Dr. Dario Neri, used rituximab (the same monoclonal antibody I received along with my CHOP chemotherapy) in conjunction with L19. From the article:

“The success of the Neri team’s new therapeutic approach relies on the ability of the immunocytokine L19-IL2 to attract and activate certain white blood cells, including the so-called natural killer cells, towards the tumor, thus potentiating the therapeutic activity of rituximab.”

Early trials using the new approach with mice were encouraging, then the scientists were able to replicate those results in humans. In the before-and-after PET scan images below, all the black spots, indicating active lymphoma, disappeared following treatment (the remaining dark areas in the right-hand photos are the brain, heart and bladder that always show up dark in PET scans):

Now, the researchers are moving on to develop the treatment for more widespread use. New medications using L19 are in phase I and II clinical trials, according to the article.

Yes, indeed - there are good things coming down the research pipeline!

Sunday, March 15, 2009

Reading in Dr. Wendy Harpham’s After Cancer: A Guide To Your New Life, I come across a passage I think may speak to my situation. Ever since my cancer treatments ended, and particularly so since I went out of remission, I’ve found it difficult to plan for the future. I’ve tended to take things as they come, responding much more passively than ever I used to.

It’s a consequence, I’m sure, of the disorienting experience of going from reasonably good health to treatment for a life-threatening disease. During my treatments, I suddenly found myself wondering if I’d ever get to do the things most people expect to do in their middle and later years: see my children get married, be blessed with grandchildren, experience further professional advancement, retire, leave a legacy of some sort, etc. Suddenly, it seemed like everything could be abruptly cut off. I found myself grieving things I wasn’t even sure I was going to lose.

Since entering remission – and then, after that, the uncertain, watch-and-wait period I now find myself in – I’ve outwardly returned to normal activities, and even taken on a few more. I’m crazy busy, having thrown myself back into not only my pastoral duties and my part-time seminary teaching, but also taking on new work as our presbytery’s Stated Clerk. I’ve made myself so busy, in fact, that I don’t have to look very far into the future. (How convenient.) Just keeping up with the present is taking all my energies.

Perhaps I’m pursuing what Wendy calls magical thinking:

“Planning for the future means having confidence that the plans will come to fruition. You lost a lot when you got cancer. You feel vulnerable. You want to protect yourself from avoidable loss and pain. If, on any level, you are insecure about your future , you will feel anxious when you start to make plans, because you do not want to lose any more.

Sometimes a component of magical thinking makes it difficult for you to make plans. You may feel that if you make plans, you are setting yourself up for a problem that will sabotage the plans. ‘If I don’t make plans, there won’t be any plans to get ruined. If there are no plans to ruin, I won’t get cancer.’” [Wendy Harpham, After Cancer: A Guide To Your New Life (Norton, 1994), pp. 288-289.]

A little later, she gives this sage advice:“Waiting for everything to be back to normal before you see yourself as really living is a waste of precious time. There is no time like the present.” [p. 298.]

Things are never going to get “back to normal” for me, medically speaking. Even if I enter into a solid remission and stay there, I’ll still have to keep going for scans, facing the reality of a possible recurrence. The only sensible response is to keep on living, in spite of it all.

Friday, March 13, 2009

“Well it ain't any fun when they tell you you have cancerAnd it sure don't help when they say they have no answerAt the time you'll think it is the greatest curseLet me tell you there is one thing that's worseIf they tell you it was gone but now it's backWhen you thought you'd won but you're still under attackTalk about taking the wind out of your sailsIt's only tragic if you're thinking that hope failsBecause hope, my friend did not let you downNo, it carried you across the rocky groundAnd it set you on this water that you knowIt will hold you til the breeze begins to blowDon't you worry if the tide is still too lowThe day will come when your courage starts to growBefore long you will see it overflow...”

I’ve written about David before. He’s a brain cancer survivor, who’s been going through some rough stuff of late, as he’s had to go for further surgery.

He seems to be bouncing back from that (I understand he’s begun performing again), but I’m sure there are days when the realities of his situation get him down – which gives birth to lyrics like this.

One of the things I like about his song lyrics is his determination to live from hope:

“When the rain comes down let the little light burnKeep on to the point of no returnDecide that you will do more than surviveEach day is a chance for you to thriveAnd thrive you will if you make that your choiceFaith, hope & Love still need a voice...”

Here’s a homemade video of David singing a song he wrote just 9 days after his brain surgery:

Keep on giving voice to the faith, hope and love that keep you going, David. Our good wishes and prayers are with you.

Monday, March 09, 2009

Steve, a reader of this blog, reminded me of a 2006 European study that found “dramatic” results in follicular NHL patients who were receiving maintenance Rituxan treatments. Unlike the one I cited yesterday, this study includes patients who have received R-CHOP.

Those patients in the study who received R-CHOP, and who subsequently received maintenance Rituxan, experienced an average of 52 months without their disease progressing – as opposed to 23 months in the control group. That’s more than double the time.

That raises a lot of questions for me. My disease has already returned, but it’s not doing much of anything. Every time I go for a scan, the verdict is, “Still there, but no bigger.” Dr. Lerner has me on “watch and wait,” the reasons being that (1) my slightly enlarged, malignant lymph nodes are doing no immediate harm, and (2) when they get large enough to treat, there’s a high likelihood that a second round of chemo will put me back into remission (and, if I receive a stem-cell transplant instead, there’s even the possibility of a cure).

I don’t know whether starting on Rituxan-only treatments is still an option for me, at this stage – everyone in the research studies presumably began receiving them right after their chemo. Even if maintenance Rituxan is still available to me (and if we could convince the insurance company to fund it), I’m still not sure it’s the best idea. Dr. Lerner’s cool-under-fire strategy of waiting till we see the whites of their eyes before we start blasting away appeals to me.

Questions, questions. What if? When? Why? Why not? You never get away from the questions, when you’re a cancer survivor.

“Wait for the Lord;be strong, and let your heart take courage;wait for the Lord!”

Sunday, March 08, 2009

Today I run across a Reuters news article about rituximab (trade name, Rituxan), the monoclonal antibody drug I received along with my chemotherapy. It seems a research study has just demonstrated good results for “maintenance therapy” with Rituxan – in other words, continuing treatment with the drug over time, even after the cancer has gone into remission:

“An improved disease response was seen in 22% of rituximab-treated patients versus just 7% of control subjects....

Three-year progression-free survival was also higher in the rituximab group: 68% vs. 33% in controls. In the subgroup of 282 patients with follicular lymphoma, the corresponding rates were 64% and 33%. Higher overall survival rates were seen in the rituximab group as well, although the differences fell short of statistical significance....

‘Observations from this study inform the design of future studies and add to a substantial body of evidence that the combination of rituximab with chemotherapy is a new standard for patients with indolent lymphoma who require treatment,’ the authors conclude.”

At the time my R-CHOP chemotherapy ended (the “R” in R-CHOP stands for Rituxan), I was aware that some patients were continuing to receive monthly treatments with Rituxan for a year or more, as a preventative measure. This was, and continues to be, somewhat controversial. At several NHL patients’ conferences I attended, the medical experts making the speeches said the jury was still out on whether or not maintenance Rituxan does any good. With the tremendously high cost of this medication, many medical insurers had labeled it “experimental,” and were not funding its use in maintenance treatment. (I never took the matter up with my insurance people, because Dr. Lerner didn’t recommend maintenance Rituxan in my case.)

Well, now the jury has filed back into the courtroom and delivered their verdict: maintenance Rituxan does work – at least for indolent NHL patients who have had the CVP chemo regimen (cyclophosphamide, vincristine and prednisone). The researchers didn’t focus on patients who’ve had the CHOP chemo cocktail, rather than CVP – although, since vincristine and prednisone are two out of the four drugs in CHOP, I would think there’s a pretty good chance maintenance Rituxan would have improved my long-term prognosis, as well.

This raises a lot of unanswered – and probably unanswerable – questions for me. Chief among them is, if I had received maintenance Rituxan, would my remission have lasted longer than it did?

Hindsight, as they say, is 20/20. I’m not going to run off and ask Dr. Lerner about maintenance Rituxan now, but it does give me something to think about. Maybe I'll ask him what he thinks of this article, next time I see him...

This sort of promise by a politician is not new. Richard Nixon proclaimed as much, back in 1971. It’s stirring rhetoric, and I certainly applaud the intentions behind it, but the promise is very likely impossible to fulfill.

The reason? Cancer isn’t just one disease. All the experts are saying there’s no magic bullet, no wonder drug like the Salk polio vaccine, that will suddenly send the nation’s oncologists scrambling to find a new medical specialty.

Cancer is dozens of diseases, maybe even hundreds. Yes, it’s characterized by the tendency of certain cells to grow uncontrollably, rather than shuffling off to die (as their genetic programming would ordinarily direct them to do). Yet, the causes of this cellular misbehavior are legion. It’s highly unlikely that a single, miracle cure is out there, waiting for some enterprising researcher to uncover it. Why, it’s even unlikely there could be a single cure for non-Hodgkin lymphoma – which, by all accounts, is a family of dozens of different diseases.

That’s no reason to stop trying, of course. Surely, there are cancer cures waiting to be discovered, through even modest increases in research funding. If the political slogan, “finding a cure for cancer,” is what it takes to build support for this cause, I’m surely not going to stand in the way.

So, Mr. President: when it comes to rallying Americans to support the cause of healthcare reform, particularly increased funding for cancer research, I say, “Go for it!” Yet, when you hold out the dazzling prospect of a single cure for cancer, I’ll consider that more of a rhetorical flourish than a statement firmly grounded in medical fact.

Monday, March 02, 2009

One of the tough realities of following cancer blogs is that, from time to time, someone you’ve come to know and respect in this strangely intimate medium dies. This is what’s happened in the “Clusterfook” blog written by Lisa, a young wife and mother who’s been dealing with ovarian cancer for several years now.

One of the last topics Lisa blogged about was what she called “power of blog” – a concept similar to power of attorney, but having to do, instead, with who would take over her blog. As she entered hospice care, she had to find someone to whom she could entrust her username and password, so as to inform the blogosphere of her death.

Her husband is not evidently much of a computer person, so she turned to a fellow blogger. On Saturday, February 28, Lisa’s friend, Karl, posted news of her death.

Just over a month ago, Lisa mused about the reactions of some readers, who said they found her blog “too depressing.” I never had that reaction, myself, as I read her words. I found Lisa consistently blunt and down-to-earth as she described her decline in health, but she seasoned those grim facts with a quirky sense of humor and a passion for living her days to the fullest.

Here are a couple of excerpts from that post of January 26:

“As heart breaking as death is, I’m doing O.K. with everything that’s happening. Do you hear any ‘woe is me?’ in my writing? Do I sound like I feel sorry for myself? Am I crying out for pity?

No, no and no.

Every day I strive for inner peace and so far I’ve found it. I consider myself one lucky chick-o-dee, perhaps I should say I’m a blessed chick-o-dee to have such calm and inner peace.

That’s not to say that I don’t cry. Crying is a release of emotion for me but I’m not crying every day. Usually I cry when having deep, heartfelt discussions with family members and friends. Those moments when we are brutally honest about how we feel about each other and say to each other the things we should be saying but usually never have the courage to say. Then the day comes when it’s too late to say what we’ve always wanted to say.

If you ask me, it’s a gift to have those opportunities right now. My advice to you is don’t wait until you are facing death to tell those dear to you how you really feel about them. Whatever is holding you back…let it go.”

In a post just prior to that one, Lisa related what it had been like to tell her 8- and 11-year-old girls (whom she calls by the pseudonyms “Cam” and “Teeny”) that she was dying:

“Telling Cam and Teeny the truth, that I’m not going to get better, was one of the most heart breaking things I’ve ever had to do. It is NOT easy to tell your children that you are dying. Listening to them cry was one of the worst things I’ve ever heard. Not being able to fix it is the worst feeling in the world....

Dude [that’s her blogging nickname for her husband] and I decided to deliver the news to the girls last Saturday afternoon, a few hours before they had to go to church. Teeny has been consistently lighting a candle for me every week and she finds a lot of comfort in going to mass with Dude. Cam doesn’t complain about going nor does she get real excited. Dude and I thought they might find some extra comfort in going to church after talking to us earlier in the afternoon.

I’ve been too sick to go to mass for a while so Dude takes the girls by himself. He said that each girl was snuggled up as close and as tight to his side as they could be during mass. And of course, Teeny lit a candle as she always does. When she got home she told me that she still believes in the hope that I’m going to get better. God, how I wish that little ray of sunshine was right....

My kids are strong but they have been dealing with cancer in their lives for five years. I hope the lessons they’ve learned and continue to learn make them stronger and don’t scar them. Although how do you tell an 8 and 11 year old there’s a lesson to be learned when their mom dies?

Well, I’ve got them surrounded by great people and a good support system that I hope pulls through for them. That’s how you do it.”

Lisa’s blog has a subtitle: “It Is What It Is.” I can remember repeating that phrase on numerous occasions, myself, during the acute phase of my illness. I can remember taking an odd sort of comfort in it. There’s something strangely liberating about shedding all the myriad worries and distractions of everyday life in order to focus on one, true thing: living as well as you can.

One of the reasons “It is what it is” is comforting is that it reflects a fundamental truth: a cancer diagnosis is a lot scarier through the windshield than it is in the rear-view mirror. Eventually you adapt, your family adapts, your friends adapt, as together you learn to face the future, whatever it may hold. A few people around us are never able to do that, and withdraw – but most manage to make the transition eventually.

Yes, it is what it is. And, sometimes, it can even be beautiful – like Lisa’s indomitable spirit. Truly, that’s the “power of blog.” Prayers and good wishes go out to all who love Lisa and miss her.

About Me

I am Pastor of the Point Pleasant Presbyterian Church, a 450-member congregation in Point Pleasant Beach, New Jersey. I also serve as Stated Clerk of the Presbytery of Monmouth - a regional governing body composed of 45 Presbyterian Church (U.S.A.) congregations in central New Jersey. From time to time I teach Presbyterian Polity at Princeton Theological Seminary and Presbyterian Studies at New Brunswick Theological Seminary. I am married to the Rev. Claire Pula, Director of the Bereavement Program, Meridian Hospice. We have two children: Benjamin, a singer-songwriter, and Ania, an artist. I write two blogs: "A Pastor's Cancer Diary," in which I reflect on my ongoing experience as a cancer survivor (Non-Hodgkin Lymphoma, also Thyroid) and "Monmouth Presbytery Clerks' Corner," a place for Clerks of Session and other interested folks with an interest in Presbyterian polity (church government) to gather online.